(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I am in the MAC group but glad this one has opened up also. I am 64, male and have both MAC and Bronchi. The more I read about Bronchi being chronic the more i am concerned it's going to be with me the rest of my life. Right now a cough and a dip in energy are my biggest symptoms. Both inhibit my enjoying life. But I'm trying to stay positive and hope for the best.
Sincerely, David

Unfortunately I do not and I did a google search to find it before writing in the hope that I could. She can contact the National Psoriasis Foundation https://www.psoriasis.org/ - sure they'll know! My docs who do know work 1/2 days on Friday so not in office (yep, FL, where docs go to semi-retire...). I will see if I can get a name for you next week, Julie, but sure you can find it through PA related sites.
Terri

Katherine - thank you so much for all the tips when travelling.  I will order the Airborne and the Halo. I also wear a mask now once I get to the airport and I keep it on until I arrive. I am so grateful to this group!  Thank you again, Pam   

Yes look for medications that don't suppress your immune response.
I have RA also and all my troubles started with the medication I was taking for RA Humira. That started a 6 week pseudomnas pneumonia that developed into bronchialectasis. That was 8 years ago when I quit Humira.
Anyway RA is doing great on the antibiotic Minocycline 3 X a week.
Not sure what medications is used for psoriatic arthritis but hopfully find something that doesn't suppress your immune system : )
Shari

I believe you are suggesting Otezla. I tried this medication in Nov/Dec. I had to retreat because of tendonitis side affects. It is a slow process healing from the reaction to the onset of parthesis, neuropothy ,sticff neck, swollen joints and tendon pain.

I found there is a FDA black box warning on this new medicine in Australia for such reactions but not here in US. Ive strggled to find mire info about this.

I appreciate Sherri, mentioning this started with Humira, i also had my infections and lesion diagnosed after starting Humira. It seems my body likes "old school meds". I remember working at NIH seeing patients on trials for Enbrel but i wasnt a candidate then so i know im too complicated now. I hear many are doing well on Otezla or Humira so dont want anyone to take my post personally, it can be a life saver for others!

I did look up and see minocycline is also used for psoriatic arthritis also.
I learned about it on another board its called:
"The Roadback Foundation"
Just google that and check it out
Its non immune suppressive medication!

Thank you Shari,

Oops i mistyped your name when i mentioned you in a post to boomerexpert, Terri. Its hard with the fingers typing on my phone and spell checker not available here, lol. Like you my bacteria and fungal problems started in my lung when i started Humira. I go to the Dr in a few weeks so will be talking about the bad reaction i had to otezla and what we can do to minimize the bacteria infections etc. I would have tagged you in that message, could you tell me how?

Hoping your having a good day,
Julie

Hi Katherine. My name is Rosie but the system already had a number of Rosies as a username. Nope not from Melrose MN. I currently live in Vero Beach, Fl and getting ready to make a move to Columbia SC. I have read through most of the past posts and found them helpful. I am constantly on the search for new support groups as I find people who are dealing with the same issues help me feel I am not alone! I am a member of inspire and the folks in this forum are wonderful.I have battled with different illnesses throughout my 63 years. Am and always have been a non-smoker and took great care to stay away from second hand smoke. Except for stints of medical issues always kept myself healthy (exercise, ate very well, no sugars, refined starches, etc) So faced with these two diseases is a real challenge as I used to be a very active individual who now gets tired very easily and am working my way back to being able to walk a mile without running out of oxygen.

As I stated in my original post, I was diagnosed with these two diseases in July 2015. Eve my husband and I were scheduled to move to our new home, I got to spend the week in a hospital because I started coughing up a lot of blood. The hospital doctors said I had an unspecified pneumonia, sent me home the first night I went to emergency with an antibiotic. A day later, I was coughing more blood and clots, back to the hospital and this time I was placed in isolation because they thought I had TB. Infused with antibiotics 24/7 then a broncho, culture in the local lab showed nothing. Let out of the hospital in a week, kept getting worse and continued to lose a lot of weight. The sweats were horrible. Decided to be seen at the Mayo Clinic in Jacksonville. In the interim another pneumonia and blood coughing bout, more weight loss. Back to the hospital. Month later, the Mayo conducted another broncho and they grew the MAC and confirmed I had bronchiectasis. I had been battling with acid reflux and stomach issues for years. Another round of antibiotic two months apart. The second round of doxy burned my throat and my esophagus (have a motility issue so I have to take oral suspensions). It has been a nightmare. I landed in emergency three months ago with what seems to be ancillary issues related to the SIBO and fructose intolerance I now battle with due to the rounds of antibiotics I was on. Dr. Leventhal from the Mayo told me NOT to take any antibiotics without checking with him first because of possible future resistance issues. Luckily, I have been pneumonia free for 8 months now, still have the issue with not being able to gain weight (89lbs currently) and the stomach issues. I pretty much live in a cocoon at home, keep my home as germ free as possible, wear masks in public and steam clean my floors weekly. I had to hire a cleaning service to take care of my home because I just didn't have the endurance or strength to do the work myself. My lung capacity has dimensioned based on the PFT tests and legally I qualify for disability (which I am having a difficult time accepting this). Dr. Leventhal told me the antibiotic regime would do me more home than good right now. Since the changes in the MAC growth are small he wants to wait. Prescribed Symbicort but I am one that has NEVER taken medications as the first course. I found I had a gift for research when I worked on my Ph.D. so I have been doing a lot of research on these two diseases trying to find clinical study results. I read that the symbicort and like inhalers haven't yielded positive results for those like me because the cases are based on people with Cystic Fibrosis for the most part. But, it does come with side effects. I decided to wait on the symbicort. I used Xenopex when my lungs get very tight and constricted. I use the Smart vest and my husband also does the percussion cupping on my back. I use some breathing exercises that help open my lungs and have air purifiers in most rooms in my house. I am going to start therapy to increase my lung endurance in a week and see how that goes. Mindfulness exercises and meditation help me not project into the future but stay in the present and be able to get through the bad days when my breathing is quite labored. Changes in the weather seem to trigger these incidents.
I am currently trying to find information on steam cleaning, distilled water, and effect on MAC and Bronchiectasis.
That's a little about me. LOL.

To tag someone in a post do so as you would w/Twitter, @ and their user name

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity...go figure. I guess I don't feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn't make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn't have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.